Home care for medically fragile children: impact on family health and well-being

Abstract

The health status of 48 families providing home care for their medically fragile children was studied. Mothers, as the primary caregivers, experienced a greater decline in their physical health than did fathers or siblings. When the financial burden of providing care was greater and when the relationship with care providers was more strained, families had more physical illness symptoms. Who provided home care services for the medically fragile child influenced the psychosocial impact on the family. Care provided by home health aides was associated with greater negative impact, whereas care from professional nurses reduced the negative impact. The trend toward home care for medically fragile children has been accelerating; this study points to the importance of studying the impact on the family of this kind of care. Policy implications regarding the amount and quality of services and payment for them are discussed.